A blog about the life of the Balentine family: Adam, Amy, Teddy, Simon, Thomas, Peter and Goldie

Sunday, June 25, 2017

This has been hard

This has been hard.
I’m only 4 months and 22 days removed from having the back of my head
split open from Chiari Decompression surgery.

There were a couple of weeks in May that were easier than others
where I felt like I was healing and I was going to be OK. It felt like the symptoms that I suffered
with before weren’t going to come back.
When people asked me how I was doing I’d say, “I think it worked.” Well, now
I just think it is better, but not fixed.
But I still don’t really know.

I have intense fatigue that usually sets in with a pain
episode. When the fatigue sets in I can
barely keep my eyes open. This usually
happens at least once a day – usually mid-afternoon. I try to compensate with it by having
caffeine, but I feel like that just delays the fatigue and makes my body react
in other negative ways.

I lost a bunch of weight after the surgery. That was mainly due to the fact that I just
couldn’t eat much. My esophagus was in
bad shape from being intubated, and so were all those little muscles in my neck
and the back of my head that were cut open so chewing and swallowing weren’t my
favorite things to do. All the weight I
lost is back (and then some).

This is a reminder, at least for me, that we just don’t know
what people are facing in their lives. I
go to work. I get stuff done. I still smile. I have successes and failures. I play with my kids. I work in the yard. But occasionally I feel like I’m being
tortured in a prison of pain. Nobody can
see it. Nobody can feel it. And as the scar has healed on the back of my
head, many will never know the journey I’m on.

This surgery, this recovery, and this pain have opened me up
to explore my issues in new ways. Ways I
didn’t plan on being opened up (quite literally and figuratively). I was active before. There were times where I was in great
shape! I worked hard in the gym. I’ve actually been exercising regularly since
my youth. I used to train to stay in
shape for sports, and then this translated into some great habits that have
lasted through the rest of my life.

For the last year, I had to hit pause on exercising. My arms and shoulders have continued to
deflate, as the inner tube around my waste continues to inflate. This has been a major ego check for me. I had no idea how much pride I put into being
active, strong and in shape. I had no
idea how much I loved working hard, burning calories, getting stronger and then
seeing the rewards of all that hard work in my body. I was idolatrous, prideful and ungrateful,
and Lord I’m repenting of that now. What
a gift it is to be able to exercise and pursue good health – and do it pain
free.

So now I’m wondering what my new normal looks like. I think there’s a good chance that I continue
to improve and maybe the head pain I’m still having is just from healing. But I’m thinking I may live with pain for the
rest of my life.

Something mysterious happened during my surgery and I came
out of it with nerve damage in my left shoulder. If I were to reach to grab a coffee mug on a
high shelf in our kitchen, well, I couldn’t do it with my left hand. My range of motion is only about
shoulder-height and I can’t lift my hand above my head. The muscles around my left shoulder don’t
engage like their supposed to. My joints
are sore, and the muscles are atrophying.
Physical therapy seems to help, but the progress is extremely slow. I’ve found myself back in waiting rooms of
doctors as we seek to decode the mystery of my sheepshank shoulder. Doctor’s waiting rooms are like the DMV –
especially in the middle of the workday.
You find yourself looking around and wondering how you could
consistently, and without fail, book your appointments on prison field trip
day.

Man, I need prayer.
If you want to pray for me that’s great, but I actually mean I need to
be praying. I realize that nothing has
changed my heart and my viewpoint on life quite like prayer. In prayer, I’ve found myself on my knees,
crying, but knowing that God would make everything right. Maybe not today, but one day. In prayer, I’ve asked for the same things
over and over – sometimes mundanely but sometimes passionately. Then, completely unexpectedly and without
warning, I realize God has answered my prayer.
It is always in his own way and not in exactly the way I would have
orchestrated it. That’s fine though,
since he’s God and I’m not.

You also tell me not to worry about tomorrow, but pain today
causes me to worry about tomorrow. How
can I get past that? I know you’ll
provide all I need and more. But how
long will pain be a part of my life? I
want to play basketball again. I want to
ride a bike. I want to swim. I want to have more than one arm to rely
on. Would you grant me these? Help me stay motivated to do the hard work. Help me stay focused so that I don’t
over-compensate for my pain and depression with food.

I want you to take this from me, but if you don’t, I’ll love
you and I’ll change. I’ll evolve into a new me with you leading the way.